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WILDERNESS CAMPING WITH AN OSTOMY

Posted by MissMeganM, on Sun Apr 21, 2013 3:04 pm
This is for the outdoorsy ostomates - anyone have any good wilderness camping tips or kayak tips to share with me?  I just got an ileostomy 6 months ago, and before surgery I went on kayak trips and went tenting deep in the woods for days at a time - no bathrooms, no electricity.  I don't intend to let having a stoma curb any of these activities, but I want to be prepared and hear a little from an ostomate who's ALREADY done this stuff.  So, any advice for me?  
Past Member
Reply by Past Member, on Sun Apr 21, 2013 9:02 pm
Hi ya,
     I find when Im going to be doing something energetic, I have a ostomy waist band to keep the bag close so it does not flop about too much.
And the usual loose clothing, helps stop the bag pulling on your skin. As im sure you know.
We have "comfizz" here, (England)
They do three grades of protective clothing from light waistbands and vest type garments for hiding the bag on a night out, to protective clothing for anything... rock climbing,rugby, but they are not subtle.
I think the U.S version is stealth belt but im not sure.
Reply by MissMeganM, on Mon Apr 22, 2013 6:05 am
I've heard of the Stealth belt but it's expensive, and over here my insurance at least doesn't cover any kind of support garments - even though I already have a hernia!  Sucks.  To improvise, I bought a Spandex-like girdle thing for bigger ladies and cut the legs off.  Even sewed a pouch pocket into it.  Pretty good, eh?  lol!
Past Member
Reply by Past Member, on Mon Apr 22, 2013 9:09 pm
Yeah the stealth belt stuff is quite expensive.
I rarely use my support belt now i don't feel i need it so much.
As its cold here and i never wear tight fitting clothing lol.
There is small shield you can get over here that i have seen no bigger than your hand and fits on to a belt but they are $80 on some of the U.S websites.
In the U.k we can get that sort of thing free and if you want to pay for it its only a £10
for example we have this.

http://www.ostomartstore.co.uk/ostomart-prescription-products/ostoshield-stoma-protector.html
Not sure if it will suitable for white water rafting but it will stop the stoma from taking a blow.

Now that will probably fit nicely in the waist band if you can make the pocket to fit it, it might be more comfortable than the small belt (which isn't included)
Reply by JimH, on Mon Apr 22, 2013 11:11 pm
I kayak , ski, climb etc with an ostomy it is easier actually those trips looking for the perfect dead fall, cannot wait to get to shore to find a tree  thing of the past... The bag is simple, fast and clean... I use a wafer system so take one for every second day I normally get 5 or 6 days but sweating and maybe in he water , they can "get loose"... I also use a kidney belt like moto-cross bikes riders use put it over the whole thing ... It works and the bag never comes off.... Also if you regulate when you eat you can kind of control when the bag will fill .... Enjoy I have not had to stop anything ... In the winter I ski as a ski patrol in the Rockies .... The bag does not enter into anything.
Reply by dug127, on Tue Apr 23, 2013 1:39 am
i have purchased the stealth belt as well as another belt from a different company and prefere the ostomy solutions one over the stealth because of the material involved. as for spending time in the woods, i live in Maine and spend quite a bit of time in the woods. i have found that we ostomates actually have an advantage when "nature calls"...we don't need to bring a whole roll of T.P. when we go for a "walk" and also, poison ivy on the behind is no longer an issue
Reply by MissMeganM, on Tue Apr 23, 2013 7:02 am
LOL I live in Maine too.  So you get what I mean when I say "wilderness camping" haha!
Reply by beatrice, on Tue Apr 23, 2013 1:41 pm
Hi MissMegan!

I (ileo Dec '09) just have my usual 'replacement stuff' with me. I've managed to get it down to a very small light compact package (flange, 2bags, wipes, bit of tp, disposal bag). That package goes into my everyday purse or into a backpack.

Plus if hiking, I carry an empty small mayo jar (plastic and light) for emptying. Many people feel ok about emptying in the bush, but I like to carry out all that I bring in . I've even used that set-up for emptying in the car during a long drive when the need comes up with no washrooms around.

Hope that helps.
Reply by MissMeganM, on Tue Apr 23, 2013 3:49 pm
Thanks everyone for your input!  Somehow I bet going back to all my normal outdoor activities this summer is going to be a lot easier and enjoyable now that IBD doesn't rule my life, lol.  Beatrice - great idea on the mayo jar!!  Perfect thing to bring in the boat when fishing.  And my friends and family don't care if I fiddle with my bag around them; they're just happy I'm still alive, prosthetic intestine or not LOL
Past Member
Reply by Past Member, on Tue Apr 23, 2013 4:24 pm
Bears do it in the woods, so we can too - and I agree, it's a little easier than when I had all my parts.  Rough camping ideas for tent sight - don't "go where you eat" is for anyone camping.  When you are in camp, dig a latrine for that early morning empty.  You can by the disposable "potty in a bag" products at any camping store or camping department in places like Walmart.  Those are good for trail, kayak, canoe - so you can go without too much bother, they seal well and you can toss it in the fire pit when you're back or, into a garbage receptacle in or out of the trail parking areas.  If you don't have the porta/bag, you can find a deadfall to sit on, or learn your body balance/feet stance to empty while standing up.  Being mindful of nature and other people is something every "body" has to do while being a good camper.  I agree, it's actually harder for me, as a woman to urinate.  Squatting while looking out for poison ivy, having to undo my pants - so, if I have to pee too, I'll empty.  I will cover with leaves if I don't have a portable toss pouch disposable potty.  Using biodegradable toilet tissue, hand sanitizer - you should be good to "go"!

For changing my appliances, I do pack extra with me when leaving home site.  Bringing disposable dry fast wipes (I like SafeNSimple) which cleanses well, dries fast and does not affect the new appliance sticking), pre-consruct your new change as much as you can adding the gasket ring already to go and put the no-stick 'lid' back over the appliance package. Bring the supplied product toss bag and you should be able to change without a sink or much hassle.  If you do have to do it in front of anyone, you can step to the side or they will have to just love you more than they already do!  In various weather conditions with high humidity, having the most portable products is easier.  For swimming, and as other's have said - an ostomy belt is helpful.  You can get really soft ostomy belts from Hollister.  I have peristomal hernia going at all times - and surgery is a waste of time because they just come back - so - I wear a Nu Hope hernia support belt.  The belts are covered by those with insurance.  But you have to go onto Nu Hope's site and look at their offerings, and call customer service to work with you as you look because it is a bit confusing.  I love their breathable belt styles, and you can get your perfect stoma cut size hole and widths.  I do the flat panel style, but there are a lot of options.  This company even takes 'shape wear' you can buy and send to them to put in an ostomy cut ring into it!  

I agree that a belt helps my appliance last longer both home and away.  I use the Hollister products with 'floating flange', and the hernia belt takes that feature away, but I am more secure from floppy bag as well as having a longer lasting wear time.  

Camp, boat, swim, be in nature - and it'll be just as awesome as ever!  We rough camp too, and I'll never give it up!  HAVE FUN!
Past Member
Reply by Past Member, on Tue Apr 23, 2013 4:33 pm
LOVE MAINE CAMPING!  Hermit Island or really rough - up in the Rangely area.  I did Grafton's Notch - oh - man, I wanna go right camping right now, now now!  LOL - nice to see so many enthusiasts.  My idea of 5 Star holiday is out in the woods so far off the grid the critters don't know they CAN try to eat your food.  Except for leaving a can of Mixed Nuts out on the table one night, but I think that squirrel could read.  We still put our rubbish and food bins in the car at night.
Past Member
Reply by Past Member, on Tue Apr 23, 2013 6:16 pm
Megan-

I've had my ostomy for my entire 47 years. I have also camped, kayaked, canoed, snowshoed, backpacked, winter camped, cross-country skied, and gone on extended kayak and canoe trips in the BWCA and Quantico Providential Park in Canada.

I have never had any problems with regards to the ostomy doing any of these things. However, one does have to be prepared. There are some very good tips already posted, so I'll refrain from repeating them. I'm sure you've heard of Pelican Boxes, (perhaps you already have one), and I have one that is just for my ostomy supplies. I also place that box in a dry bag, just for added security. Even though I may only need one appliance every three days, I pack on for every two days, plus one extra. One would not want to use their last bag on day five of a seven day trip. I won't go in detail of what I place in that box as you already know what you will need.

Since I have an urostomy, my "nature calls" are typical of any other camper. My only difference from them comes from the actual bag changing. I pack out all trash, and this includes the used ostomy bags, so I also carry several small trash bags that I can tie-off and place in any larger trash bag. At one time I used to throw used bags into the toilets in the outhouses at campgrounds. I discovered that when the time came for park employees to pump out the "debris" from these outhouses that the ostomy bags jammed their pumps and clogged the hoses, so I quit that practice and dispose of them as I would regular trash. Of course it goes without saying that one that was respectful of nature would also not leave or bury these plastic bags in the woods.

As far as the actual strenuous activities, as you go along, you are going to learn what activity leads to what problems with the ostomy. I was never a big fan of wearing a belt until I started getting serious about kayaking. With a proper kayak stroke, one does need to twist the upper body and this led to me needing to wear the belt while doing that. Now, I always wear a belt regardless of what I'm going to be doing.

Final words; you already have made the most important step in dealing with this and that is that you are not going to give up your lifestyle just because of this "change". Any battle is 95% mental and if you have already won that part...
Reply by WOUNDED DOE, on Wed Apr 24, 2013 5:03 am
Hi Smile ....I live in the Country and Forest Lands and thrive on those activities, deep forest camping, kayaking, snow shoing, rock climbing, swimming, and all sorts of outdoorsy activities  SmileSmile  I've had my ostomy since age 10, as I like to remind people so as to help make my point, I am 46 now and still do all these things.....I maintain wearing my more comfortable pouches, take along extra supplies and extra water canteens (not just for drinking but washing as well) ....backpack in kayak Drybags all things you don't want to get wet....and Sistah, you just head on out there and have yourself some FUN SmileSmileSmileSmile!!

~Doe
Past Member
Reply by Past Member, on Wed Apr 24, 2013 6:32 am
Hi there,

I had a colostomy 3 years ago. Last spring I completed a 6 day trip on the River Tay in Scotland with 3 friends, after a 'failed' attempt the year before (due to atrocious weather). It was cold, wild and fantastic. I've written a short blog below if you're interested.

http://www.songofthepaddle.co.uk/forum/showthread.php?35040-River-Tay-Descent-again

The main things for me  were to take plenty of ostomy supplies, have a tent of my own and understanding/supportive friends.

I seem to be heading for a ileostomy now so no more trips this year but I was skiing in France in February and rock climbing on Lundy Island last august.

good luck with your adventures

ps good to see so many outdoorsy ostomists.... I though i was the only one!
Reply by MissMeganM, on Wed Apr 24, 2013 9:01 am
Thank you so much everybody!!  It makes me feel SO much more reassured that I can go about my everyday business having fun on vacation and not have to really worry that much has changed - just by hearing the stories from you guys!  

SariJo - I LOVE HERMIT ISLAND!  Isn't it gorgeous?  I had one of the oceanfront sites the last time I went   Usually I go up around Jackman and the Quebec border - I've never camped in the Rangeley area, but maybe this year?

I guess I'm more intimidated by roughing it with an ostomy more than anything else - but my friends and family are really supportive.  I've tried to get the NuHope belt approved by my insurance - I have a hernia, too - but they denied payment for it Sad  Oh well.  I think I might buy one just out of pocket.  Seems like a worthwhile investment for all the things I want to do this summer
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